When our little peanut, Dariel, was born three years ago, we knew something was wrong; however, even the doctors were puzzled. Every breath was a struggle for Dariel. The doctors were unable figure out how to help him. Because of his diagnosis of “failure to thrive”, Dariel was sent home and hospice was set up. We were told our little peanut was going to die. The doctors gave up!
Well, we could not take NO for an answer!
We set up an appointment with the Children’s Hospital of Philadelphia for a second opinion. While at CHOPs, the doctors were able to diagnose Dariel with a number of different, yet related, disorders. Primarily, Dariel was diagnosed with Chromosome 21Q 22.12q22.3 Microdeletion, a missing chromosome which is extremely rare. It is so rare that the medical books are being updated based Dariel’s symptoms, even today. While at CHOPs, Dariel was also diagnosed with Ventricular Septal Defect (a muscular disorder), Factor VII Deficiency (a blood disorder), a feeding disorder, a seizure disorder, and Hypospadia (a urinary disorder).
While we were relieved that we were able to get a diagnosis, the prognosis is still very unclear. At this point, we do not know how long Dariel will live with all of these conditions. For now, Dariel requires full-time care because he is unable to effectively communicate, needs assistance with everyday tasks, and can be inconsolable at times. In addition to his medical conditions, Dariel was also diagnosed with autism approximately a year ago.
STRUGGLING WITH CHROMOSOME DELETION AND AUTISM
Like many children with Chromosome Deletion and Autism, Dariel was noticeably delayed in all aspects of development early in life, such as sitting up, crawling, and talking. To help with these delays, we are investigating the possibility of placing Dariel in an early intervention program through the local IU, but we also want to make sure his medical needs can be handled.
Life is not easy for Dariel. He is unable to let us know when a seizure will occur, he cannot tell what he wants or needs, and he is unable to feed himself. At times, Dariel gets very frustrated and hits himself. Together as a family, we take it one day at a time. We love our son and want to give him the world. When we are unable to be home to care for all of his needs because of either work or school, nursing care is provided. It has been a struggle for the entire family. It definitely takes a group effort to raise a special needs child.
THE JOYS OF SPECIAL NEEDS KIDS
Special need kids rarely get the recognition they deserve for the small, but meaningful accomplishments they achieve. While there are significant struggles; there is also the joy success. With the help of wonderful therapy and nursing staff, Dariel is starting to show small improvements. Due to their hard work, he has been able to start walking with a specialized walker. Dariel is a fighter and has shown us that fighting spirit in his quest to learn to walk.
Thanks to another local family with a special needs child, we became aware of 4 Paws for Ability, which is an organization that provides service dogs to special needs children. Similar to a service dog for people who are blind, service dogs can also be trained to help cope with the difficulties for many types of special needs children. An application for a service dog through 4 Paws for Ability was completed and accepted for Dariel. Based on the application, the service dog will be trained for behavior disruption (touching, nudging, and snuggling) when Dariel is upset, assist with stability for Dariel when walking, tethering during walks to prevent Dariel from wondering off, tracking in the event Dariel would get lost, and alerting of an impending seizure. The service dog could also help Dariel with social interaction skills with others when he is out in public with his service dog. While not specifically trained to aid in sleeping, a number of service dog recipients have also noticed that they have seen improvements in their child’s sleep patterns.
As you can imagine, the cost associated with training such a specialized dog is staggering. To help defray this cost, we committed to raising $14,000 in support of 4 Paws mission, which is only a portion of the $22,000 total cost associated with placement of a service dog. This does not include the personal expenses of traveling to Ohio for two weeks to receive the appropriate training before bringing the service dog home or the expenses associated with caring and raising the service dog.
If you or your business is interested in donating to 4 Paws for Ability, a 501c3 tax-exempt nonprofit organization, in honor of Dariel, you can make a tax- deductible donation by visiting 4 Paws Donation Page (http:// www.4PawsForAbility.org/donate-now) or mail a personal or business donation to:
4 Paws for Ability, Inc.
IN HONOR OF DARIEL NUNEZ
253 Dayton Avenue
Xenia, Ohio 45385
Donations should be made payable to 4Paws for Ability, Inc. and mailed directly to 4Paws. It is requested that you write “In Honor of Dariel Nunez” in the memo line to give credit for a donation to Dariel or contact Jansell at Jansellnunez@hotmail.com for a donation form.
If you donate via PayPal from the link on this website, please enter Dariel’s name in the “Special Instructions” OR “Instructions to the merchant” box during your donation process through PayPal’s web site. The link to the Special Instructions appears on the last page of the process. If you have already donated and did not know this, just call or email 4 Paws to inform our CEO, Karen Shirk, where your funds should go.
FOLLOW DARIEL’s JOURNEY FOR A SERVICE DOG ON HIS FACEBOOK PAGE: 4PAWS FOR UNIQUE DARIEL.